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NIMEA Medical Conference,
Lisburn, Co. Antrim,
8th September 2007.
The Northern Ireland ME Association held a successful medical conference on
8th September. Present were paediatricians, GPs, hospital consultants,
nurses, O.T.s, representatives from the Health and Education boards - and
DLA medics.
Delegates were welcomed to Lisburn's riverside Civic Centre by the Lord
Mayor - who has staff and family members affected by ME and Fibromyalgia.
Doctors and visiting speakers got on famously. Generous catering was
supplied ensuite, and attendees didn't leave the function room all day.
Terry Kelly, NIMEA's benefits officer, was in demand, explaining the
intricacies of DLA.
First speaker was Dr. Larry Martel, paediatrician at the Ulster Hospital,
Dundonald. "I do not believe that ME is a psychiatric condition", he
declared. "It is a physical illness". That set the tone for the rest of the
day. There was no hard-sell of CBT and GET; no-one blamed the patients for
being ill. Instead the conference got down to the serious business of what
could and should be done for ME patients.
Second was Horace Reid of NIMEA, who since 22nd August had distilled 317
pages of new NICE guidelines into a 50-minute Powerpoint. These guidelines
are not the mixture as before. The authors were practitioners rather than
well-known ME researchers. NICE had its own definition of CBT, much of it
good old-fashioned common sense, and none of it about "dictation of illness
beliefs". The NICE brand of GET is not an imposed rigid schedule; it had
built-in rest periods; and it comes with explicit warnings of adverse
effects. NICE asserted that in ME as in other conditions, the patient's
rights to consent and choice of treatment were paramount, and
non-negotiable. NICE takes the view that manifold psychiatric hypotheses -
remain hypothetical.
The audience rapidly warmed to Dr. William Weir, famous for his amusing
presentation to Dr. Ian Gibson's parliamentarians, and respected for his
long experience treating ME. Willy has a streak of Boris Johnston in him:
shrewd, robust, and unfailingly polite. He cocked a satirical snook at the
philosophical pretensions of the bio-psycho-social camp. "Postmodernism and
Cartesian Dualism? It's all fiddlesticks." (He used a saltier phrase). "This
stuff has no relevance to the real world!" Conference had already come to
the same conclusion, and delegates now fell about laughing. Dr. Weir
considers that the guiding principle of managing ME is common sense, and
treatment can be left in the hands of a competent GP. "It's not rocket
science."
Jonathan Kerr was to have been first speaker after lunch. But he came down
with a last-minute bug, and was unable to travel. Instead he entrusted
presentation of his latest research to Dr. Weir, one of his many
collaborators. His findings, soon to be published, confirm abnormal
immunological activation in ME patients. An array of genes governing immune
responses are abnormally "switched on". Better than that, he has now
identified a number of clinically separate ME subgroups, each with its own
genetic signature.
Dr. Noel Scott, liason psychiatrist in charge of the CFS Clinic at Belfast
City Hospital, commented on preceding speakers. He echoed one of the key
NICE findings - patients and doctors should stop quarrelling about
imponderables, and concentrate on what could be achieved here and now. Dr.
Scott's clinic is seriously under-resourced. His own role is unfunded, and
his O.T. works part-time. Since April 2007 he has been unable to accept
regional referrals from outside the Belfast area.
He was followed by Jayne Perkes, his Senior Occupational Therapist, who
conducts group classes spread over 8 weeks. She prefers Graded Activity to
GET. A survey of 33 patients in 2005-6 gave her a 90% satisfaction rating.
To wind up, NIMEA president Sylvia Bolton engaged delegates in a
brainstorming session. Split into groups of three, they were asked for
suggestions. One paediatrician took a supportive, rather than macho approach
to the severely affected. Another was unimpressed with the efficacy of
recommended treatments. The psychiatric delegation reflected on the damaging
effects of mental health stigma. A DLA representative regretted the divide
between ME doctors and patients.
Everyone deplored the lack of treatment provision. O.T.s said they were
interested, but as things stood, there was no hope of them taking on this
time-consuming condition. Two ME mothers, who were also NHS nurses, had
come. Both had severely affected teenagers, and found NHS support was nil.
NIMEA identified many gaps in provision - for children, for the severely
affected, and for patients distant from Belfast. NIMEA has long suspected
that many of the severely-affected are not in touch either with the NHS or
charities. They were dismayed to have this situation confirmed on Saturday.
A health board member had strong words of advice for the ME world - NHS
provision would not increase until local MPs were alerted to the current
parlous situation in Northern Ireland.
Around four pm delegates dispersed into the autumn sunshine. Dr. Willy Weir
was last seen settling in front of a Rugby World Cup match, before his
flight back to London.
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